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Good news from NICE

Those of you who suggested on the NICE web site that they should consider Dasatinib for assessment should today have had a response by Email from NICE. It is good news in that NICE have been asked by the Department of Health to take the first step down that road towards assessment, an initial consultation. It is a small but very significant step, not only for Dasatinib but also for Nilotinib. Thank you to NICE, quite a few MPs and others for getting it this far. Let's hope that the initial consultatation leads to a full assessment and NICE approval of both Dasatinib and Nilotinib. The full text of the NICE Email of today's date follows.

David

"Dear Topic Suggestor,

Re: NICE Topic suggestion on dasatinib for chronic myeloid leukaemia

Thank you for your topic suggestion on dasatinib for chronic myeloid leukaemia.

NICE reviews all suggestions to ensure they are appropriate and to check whether they are already included in its work. We have recently received a ‘minded referral’ from health ministers on the following topics which are likely to incorporate your topic suggestion.

· Dasatinib and Nilotinib for imatinib-resistant chronic myeloid leukaemia. Remit: To appraise the clinical and cost effectiveness of dasatinib and nilotinib for imatinib-resistant chronic myeloid leukaemia

· Dasatinib for acute lymphoblastic leukaemia. Remit: To appraise the clinical and cost effectiveness of dasatinib for acute lymphoblastic leukaemia

· Nilotinib for acute lymphoblastic leukaemia. Remit: To appraise the clinical and cost effectiveness of nilotinib for acute lymphoblastic leukaemia

When we receive a minded referral, we carry out an initial consultation to examine the remit in more detail. Comments from the consultation are then passed back to the health ministers to enable them to make a final decision on whether they will ask us to produce guidance on the topic.

Further information on these topics including draft scopes will be available in due course on the NICE website in the proposed appraisals section http://guidance.nice.org.uk/page.aspx?o=proposedappraisals

If you have any questions in the meantime, please contact our enquiry team at nice@nice.org.uk

Yours sincerely,

NICE Topic Selection Team
http://www.nice.org.uk/topicselection"

hi David,
thankyou for posting this on the forum.

given the paragraph below...

...When we receive a minded referral, we canny out an initial consultation to examine the remit in more detail. Comments from the consultation are then passed back to the health ministers to enable them to make a final decision on whether they will ask us to produce guidance on the topic....

it may be a good idea to write to the health ministers just to let them know we are still here and expecting a positive decision on this.
i will be writing to the health minister, Alan Johnstone, on behalf of the CML Support Group, but it would do no harm for as many individuals as possible also to put pen to paper.

the letter should point out that for the majority of the CML patients who develop resistance to and/or are intolerant of Glivec there is no alternative therapy available. both new inhibitors have shown remarkable efficacy in clinical trials and are already saving lives.
the extra burden on the NHS is negligable as CML is a very rare disease and the patient population that develop resistance is very small etc. etc.

what do you think?
sandy

Val and I also had the same response from NICE. We have already penned a letter to both our MP and the health minister about the current situation and will post the response when, and if, we receive one.

Phil Greenwood

I very much agree with Sandy as to what should be done now and I will add my bit by writing to my MP, who has been very supportive so far, asking him to take this up with Alan Johnston, the Minister of Health. The truth is that the successful appraisal of Dastinib and Nilotinib by NICE is not yet a forgone conclusion and we must not relax our efforts to make the needs of CML patients fully heard in the right places. In short, we must keep the pressure on.

Could I ask as many CMLers as possible to do the same thing. If anyone needs help with drafting a letter to their MP, I would be very willing to help - just let me know via the Forum here.

David

hi David and Phil,
this is the best strategy i think. we may be a small patient population but we have a loud voice and we should build on this.
the more of us that write letters to ur MP's as individuals the better.

it is essential that the small percentage of people that show resistance/intolerance to Glivec should have access to the two other life saving inhibitors that are available.

those of us that are doing well on Glivec or (like myself) have had successful transplants should not rest on our laurels. life has a habit of suprising us when we least expect it and we may one day be in the unenviable position of needing an alternative drug. a NICE appraisal of both drugs is essential if we are to feel secure.

cml support was formed in 2000 expressly to help and support CML patients and fight for access to the best possible therapies available. this is the core work that we do and will continue to do.

thanks to you both (and others i hope) for your continued support of all cml patients.

best,
Sandy

A draft letter would be fantastic please! Our MP sent me two letters in response to the last one and some help in asking him to keep up the pressure would be great. Thanks,
kestrel